Life with Phoebe Heaven-Side

Each Word a Rung

I think I was eleven; sixth grade, Mr. Maloney’s class, the first time I fell in love with a paragraph. I don’t recall the story we were reading silently at our desks, but I do remember the lemon-lime candy the author described in such exquisite detail that it made me drool on my shirt. All I could think about for the rest of the school day was this piece of lemon-lime candy the girl in the story was savoring. I had never even tasted lemon-lime candy, but I knew I had to find it. Now.

The power of the imagery and description in that paragraph stayed with me until at last I found a lemon-lime candy of my own. Silly, yes, but the fact that four little sentences had impacted me so, made me take notice of the written word in a new way.

It’s my mother’s fault. I blame her for my ridiculous appetite for books. When I was nine she and I took turns reading “The Secret Garden” at bedtime. Each night I would hurry through my bedtime routine so we could have more time to read. I was enchanted by the mystery of the garden, the waif-like and crippled Colin Craven, stubborn Mary Lennox, and Dickon Sowerby who could talk to animals. The Narnia series soon followed and scores of other books I bought from the Scholastic catalog. Oh happy day when that shiny catalog showed up on my desk at school. I still swoon at the memory.

As a teenager, poetry became paramount as I devoured the works of Poe, e.e.Cummings and Rainer Maria Rilke. I filled journals with poetry; Haiku, prose, line poems, Diamante. I pontificated on topics like the Holocaust, religion, love, death, and of course teenage angst. I hashed it all out with words and gave it all to Jesus when I was 21. Fifteen notebooks full of ink are smashed into boxes up in my closet. At least the ones I haven’t burned.

It’s typically how I’ve worked through things in my life; pen to page. But lately, I’ve felt quiet. The missing her comes in waves and sometimes leaves me gasping for breath, and all that’s left is to draw air. My words fail me. Other days I seem to be on auto-pilot. Get up. Brush teeth. Make coffee. You get the point. I kind of just “exist” completing the necessary tasks.

But sometimes I am slayed with such beauty that my heart cracks open and can feel, really feel, something good again. Hope maybe, expectation. And then, as quick as it came, it recedes back and is again replaced by the fog that is grief.

I do want to write. It is the one thing I have always known. I have navigated some treacherous depths by getting it all out on paper. This blog has been such a catharsis for me on Phoebe’s journey. Even when I can’t find words of my own, I recall stanzas I have long loved, like this one from Pablo Neruda I’ve shared before;

Tonight I can write the saddest lines.
To think that I do not have her. To feel that I have lost her.

To hear the immense night, still more immense without her.
And the verse falls to the soul like dew to the pasture.

What does it matter that my love could not keep her.
The night is shattered and she is not with me.

This is all. In the distance someone is singing. In the distance.
My soul is not satisfied that it has lost her.

My sight searches for her as though to go to her.
My heart looks for her, and she is not with me.

The same night whitening the same trees.
We, of that time, are no longer the same.

~end

I need to write each day. Even if only a word, just one word. It will be movement. It will mean something. Like rungs on a ladder for climbing out of grief. Each word a rung.

Lately I have been climbing Psalms;

“The secret counsel of the Lord is for those who fear Him, and He reveals His covenant to them. My eyes are always on the Lord, for He will pull my feet out of the net.

Turn to me and be gracious to me, for I am alone and afflicted. The distresses of my heart increase; bring me out of my sufferings. Consider my affliction and trouble, and take away all my sins.”

~Psalm 25: 14-18

“He keeps us alive and does not allow our feet to slip. For You, God, tested us; you refined us as silver is refined. You lured us into a trap; You placed burdens on our backs. You let men ride over our heads; we went through fire and water, but you brought us out to abundance.”

~Psalm 66: 9-12

Climbing on, Amey

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About Amey Fair

I am Amey Fair, wife to Nathan, and home-educating Mom to Benjamin (9), Averic (7), Deacon (4) and Phoebe (2) . Phoebe was diagnosed with a rare childhood malignant brain cancer called Atypical Teratoid Rabdoid Tumor on January 1, 2012. She had complete resection surgery to remove the tumor on January 4th and began chemotherapy using the Dana Farber protocol on January 26th.
A few weeks ago I was sleeping in the chair next to Phoebe's bed in the hospital when I heard her little voice drawing me out of sleep. It was 3 am and it took me a minute to shake off the slumber. "Mommy I'm a mean girl" I thought she said. "No Phoebe, you're a nice girl!" I replied. "No Mommy, I'm a MIRACLE!" Phoebe said. "I'm a MIRACLE, I'm a MIRACLE, I'm a MIRACLE!" she continued on. My tears welled up and spilled over as she made her declaration. Phoebe doesn't know the word "miracle" nor the concept, she's only 2. It was as if the Lord was speaking through her like a prophetic utterance. She fell right back to sleep and I sat there awake, lingering in the magical moment. Less than 40 children are diagnosed with Phoebe's type of cancer in the U.S. each year. This is why it's called "ATYPICAL Teratoid Rabdoid Tumor". So, I have titled this blog in honor of Phoebe, our "Atypical Miracle".
We are YWAM'ers, serving in missions through Youth With A Mission since 1998. Before returning to the states 1 year ago, we lived near Guadalajara Mexico for 3 years. It was during our year of agricultural missions training in Waco, TX that Phoebe began exhibiting symptoms from the pressure of the tumor on her brain. Weight loss, lethargy, extreme thirst and vomiting were her symptoms.
We have been granted sabbatical during this time to focus on Phoebe's intensive chemotherapy treatment and are renting a home in Dallas near the Children's hospital where Phoebe is being treated.
Like the woman who touched the hem of Jesus' robe in Luke chapter 8, we cling to Him, knowing that He is Phoebe's healer. If we can just touch Him, be near Him, bring Phoebe to Him each day, we have hope. He is our hope.
Thank you for coming along on this journey with our family. It's therapeutic for me to write it all out, and in so doing, I hope God will use it for His glory.

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Amey, words are therapy. They are the shoulder we cry on, the friend when we are lonely, and the voice in the night we listen too. They can absorb our hurt, turn it around and make it beautiful memories. You write so beautifully, never stop. May God bless you and your family.

Your words share a grief that others have known but no one can explain it the way you do and make the reader really feel the depth of your grief and the struggle to climb out of it. I pray for you and your family each day. I watch anxiously for your post. Phoebe will always live thru your words and will continue to bless and lead others to Jesus Christ.

Amey…..your GOD (and mine) has given you such a gift for reaching into people’s hearts and minds. I have kept every post you had written when Phoebe’s journey started. They have touched me, made me laugh, and caused me to drop to my knees and tears have flowed. And for all of these things I thank you. Our family is know in a situation of losing a family member to a malignant brain tumor and your courage and strength that you put into your words helps me now. Roland’s brother was diagnosed in Jan. 2013 and after months of treatment, surgery and struggle, he has been taken off all medications except for pain and seizures. The point is…. even now….Phoebe & her family help and bless us. Thank you for sharing your story and know we love you and pray for you, Nathan, your sons and family. And I thank GOD for always being there for you and me….. “GOD is not a Meanie…..” Gayle Ball

I would read even just one word of yours daily and probably still be deeply moved. Not just because we’re friends but because the gift of writing in you, is captivating like lemon-lime candy 🙂 I savour your words regularly.
I’m still thinking and praying and loving the Fair family!!

How full of life are your words of uttermost grief. I stand amazed at your ability to reach down into your soul and cause my heart to feel what you feel. It is painfully twisted and senseless without the knowledge that God has a beautiful plan that will rise from the ashes of this gift that was precious Phoebe’s journey.

Writing is beneficial therapy. When you get it all on the page and sorted out in your mind, it would make a story full of blessings, hope, faith and beauty that was your families gift. How blessed Phoebe was to have you for a mom and Nathan for a daddy.

My love and prayers are for all your family. Isn’t it wonderful to have a savior and to know that this life is not all there is. My husband has terminal cancer and is not doing well, but satin can take away our happiness but he can’t take away our Joy. In this world our lives and happiness are fleeting. Jesus is our Joy forever. My husband and I went on a trip to Greece with Zig and Jean. I, also, worked for a time with Jean at the Church on Monday mornings. I was so glad to see you had sent a message today. I have been keeping up with your family since the beginning and feel I know you. Our precious God will see you through this season of unthinkable grief and back to service for Him.

Aw, sweet Amey. Grief is so draining & it makes the holidays so hard. But praise God, there is always a rainbow at the end! And more joy than you can contain will be back. There is always hope, for without it we couldn’t exist. I’ve always wanted to write because I find such joy in reading. I love books. I’ve tried to instill that in my kids but they didn’t seem to grasp what I feel. My hope is that they will when they have children to read to. Hold on to your memories & your hope. I know you will feel the words to write real soon because what you just shared was beautiful & poetic. Love to you Amey & your family. Peace for you this Thanksgiving as you are thankful for your sweet daughter & all the memories you hold dear. Hugs & blessings, Elaine

Words: containers of hope and power, among other things. I’m so glad you can use yours ~ and God’s ~ to continue your journey. And it’s so special when you share with us, Amey. I, too, watch for your posts and share in the community of prayers who surround you, with love, Joan

Hi Amey,
Words are powerful and I believe we do not really understand just how much power they hold. God tells us that His Word is a double edge sword, Hebrews 4:12 For the word of God is alive and active. Sharper than any double-edged sword, it penetrates even to dividing soul and spirit, joints and marrow; it judges the thoughts and attitudes of the heart.
Keep writing down even if it is only one word. Praying and praying for you and your family, often.

Keep writing Amey. This will cont to bring healing. Your family and Miss Phebs has touched so many lives. Ya’lls journey is going to help many for years to come. The healing is daily coming of you all. Share those beautiful memories. Happy Sad. What ever. We are all human. You are showing that life is hard sometimes but you are also showing that we can get thru anything we face because we have Jesus. We cont to love and prqy for you.

I am also a ‘word’ person, when I don’t know what else to do I can write. Many times it is my prayers to my Father, if I write all my concerns and pain, I can leave it in His care, and not need to be anxious any more. I appreciate your words, it has always showed us your humaness and more than that, it reminds me to pray for you, for Nathan, and for your boys. We can imagine the giant hole left in your lives with the loss of Phoebe. No one that hasn’t lost a child can truely feel your pain, but with your words we get a sense of the enormity of it. May God continue to heal the pain, and bless you and your family. We send our love to you.

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I meant to send this comment: “I knew it! I knew you were a gifted writer! I have loved everything you’ve written during The Crisis, which has no end until you hold her in your arms again. I said once that you should compile these thoughts into a book, Dear Amey, and I say it again. People will be empowered, comforted and amazed.

Please know that those of us who were with you in the battle of life are still with you in your battle to live on. We care, we are here, cilmbing the ladder beside you in prayer. GOD is good all of time sweet Amey. I know you KNOW that. I pray you feel it deep within.

Amen Amey. Keep writing! You have a beautiful gift. God knows the gifts he gives His children…meant especially for each one… and ultimately laid at his feet. Thank you for bringing glory to our LORD by sharing your journey with us in this way.

The word of God is living and active, sharper than any double edged sword…. You have reminded me of the importance of clinging to God’s Word at all times. Keep clinging Amey! So many of us are clinging with you!

Please, never stop writing Amy. Phoebe will forever be with you but each of us needs to hear from you about her memory. You have changed so many lives, mine for sure, with your words of endearment and love. Let God lead you again, through lines of beautiful word. We need you, as we need him. Thank you for loving so much that you continue God’s gift of “words” in your life for us.

I have missed you and your writing! You are so gifted. I am sure there are people out there that are part of your blog that this is helping them heal also. Praying for an ease of the waves. We love you and your family.

Amey, we so love your written word and the openness of your journey. We are with you on the path and now the ladder. Interceding for and with you. Lifting up your family and asking for God’s comfort and healing, His peace and blessings. Please keep writing. You have captured our hearts through your written word and thru your transparent journey with your beautiful girl with the monkey slippers. Sending love to you and your family.

Oh Dear Amey, your writing is amazing. No words can describe. Makes us feel every emotion. I wish I could write in English like you do, for I once was also 11 and I started writing poetry. I am a great writer in Portugues at least I was. I haven’t written much.
You should write a book for I know that your books will inspired many and change people lives. I have told you once and I here I am letting you know again. I am waiting for your books that one day you will write.
Happy Thanksgiving to you and your entire family. May The Lord comfort you all and always bring you all peace.
Love you all,
Priscilla Harle

I think that your writing is absolutely amazing! You are able to put things into words so well! Your words stick with me as I live life and are so inspirational. Your words are REAL! You have let readers follow your journey and feel the things that you have felt. And because of this, your pain is our pain and we pray for you and try to help carry your burden, without even knowing you! As long as you keep writing, you will have many keep reading! 🙂

You write so beautifully, I look forward to your posts, even though I do not know you personaly. I feel like I have known you forever. I think we would be friends. I have a thirteen year old and a thirty year old. But I also have a two year old granddaughter. I think of her as you speak of your Phoebe. I will continue to pray for your healing, but you need to continue your writing.GOD bless you my dear.

Words are trustworthy sails that can help to keep us stable through the worst of storms. You are so gifted to be able to use them with such beauty and clarity and we’ve been gifted to have you share them with us. Thank your mother for being part of instilling in you such a fine skill.

Thank you for sharing your beautiful words and God’s Word with us, Amey.

Your reflection, and your prior thoughts on waves, made me remember Norman Maclean’s thoughts in his story “A River Runs Through It”:

“In the part I was reading it says the Word was in the beginning, and that’s right, I used to think water was first, but if you listen carefully you will hear that the words are underneath the water…The water runs over the words…On some of the rocks are timeless raindrops. Under the rocks are the words, and some of the words are theirs.”

May Christ continue to be your rock, with the Spirit helping you find words beneath the water you are moving through. Blessings for a restful Thanksgiving. I am so very grateful for witnessing your journey and Phoebe’s light, which continue to inspire us. Love and hugs to you all.

Sweet Amey my heart aches with you. Your pain is as none of us can truly know. I want to offer you comfort as one to another who has loved and watched helplessly as death slowly takes life away from one so truly loved,who fought the good fight, ran the race, and at the end of the race went before The Lord! At the end of his race i was left to do as I had learned to do many times in the 2 years prior: REST MY SOUL in the love of Jesus. I so remember the waves, the intense feelings of loneliness, the screamings in the deepest parts of my soul that I never knew existed, the guilt that would quickly rise to the surface if I began to feel the slightest twinge of joy, the journey goes on and on —- ——I am here for you, others are here for you, Just REST and trust as you rest YOUR SOUL IN THE LOVE OF JESUS.
Loving and always praying for you,your hubby, your boys, and your family ,
Marilyn from TN

You SHOULD write, you are very good. I’ve really enjoyed reading what you have written here. I’m not a religious person, but am no stranger to loss, and my heart goes out to you. Your daughter was special, beautiful, precious. The things we have to endure in life – I don’t know how we survive. But we do.